For Raynaud's Sufferers
Posted 06 November 2006 - 03:58 AM
Being from Florida, I have not had much experience with Raynauds. I have seen my toes turn blue and white every now and then, but it was a seldom occurrence. In fact, early on I was under the impression I didn't have it. Well, last Thursday through Saturday, my wife and I made a trip to Northwestern, in Chicago, to see Dr. Burt, who is an expert in stem cell transplants and Dr. Barr, a rheumatologist. They are both involved in a clinical trial entitled The ASSIST Trial. In any event, the minute I stepped off the plane, my hands turned bluer than blue. Though I sympathized before with those suffering from this disease in cold climates, I even have more sympathy now. I am also now convinced, more than ever, that I have Raynauds. It simply has not been much of a problem because of where I live. Thankfully, my wife bought me gloves before we left for Chicago. My heart goes out to all of you in colder climates. While Chicago is a beautiful city, it was good to get back home.
Dave in Florida
Posted 06 November 2006 - 06:20 AM
You are lucky to be able to live in a warm climate aren't you?
Up until a few years ago, when a patient saw a doctor about Raynaud's, they'd often get told that the best prescription is to emigrate somewhere warmer!
Anyway, I am thinking of spending a vacation in Florida shortly, so I hope the warm weather continues! I know that I won't be wanting to return home to chilly England too quickly though!
Thanks for posting your 'sympathies'
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Posted 06 November 2006 - 08:11 AM
Posted 07 November 2006 - 03:30 PM
I have noticed the same thing....a draft (cold air blowing) is much worse then just the cold temperature. That is why, for me, air conditioning is actually worse then just cold temperatures.
Posted 07 November 2006 - 04:11 PM
I never really pushed for a diagnosis until I was in for an outpatient surgery. My oxygen alarm kept going off. When they realized I was hearing it they turned the alarm off. On the way out the Anesthesiologist told me that I needed to look in to Raynauds. I went to a rheumatologist that was worthless. She told me I didn't have it...along with the list that the labs had uncovered. I changed doctors and confirmed the whole thing. A diagnosis has not fully been given but it looks like Lupus and/or Sclero.
I have been having a series of small surgeries and each time it is worse and worse to get the oxygen count. I am scheduled for another next week and that concerns me. According to the progress it is making I really doubt that they will be able to get any reading. The last time they were able to get one reading and went with that.
I tried to talk to a nurse about that and she kept telling me "no problem" and "if they can't get a reading they will not do the surgery". NO PROBLE that's nuts.
Then I asked the surgeon and he wasn't aware of the problems but assured me there would be no problem. I told him if that IS a problem I will tell them to talk to you.
This is crazy! Any idiot would know I am getting oxygen and I believe anyone with any medical understanding would know my levels are OK. Have any of you run across such as this?
Posted 07 November 2006 - 04:22 PM